debrah
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Hi Charlene, It is so nice to have people who understand how difficult it is living under the cloud of cc? I think that people figure that just because you are no longer receiving chemo/radiation that you should be fine and able to do “anything” even my own family. Maybe it is their way of coping or dealing with the fear..I lost some dear friends after my diagnosis. I realize that it is frightening to think about ones own mortality but geez why run away when we need our friends the most.? It is not only physically draining but the emotional toll is exhausting… I have never been good at asking for help …I am better at giving than taking. I will have to learn to ask. Today I feel good and I will take advantage of that and enjoy the sunny though chilly day…then go to bed as soon as my kids do!
Hugs and prayers to everyone! Debthank you carol for the encouraging words…wish I could nap when I want except I am still a mom who needs eyes on the back of her head…I have adopted 2 spec.needs children who are now teens and 10 y/o son. Never a dull moment around here..just exhausting ones
I am 14 mos out from diagnosis but drs feel that I had undiagnosed cc for at least 5 yrs. I hope your husband feels better…he is in my prayers. lets all get a good nights rest. sweet dreams to all debMarion I am so glad you know of Dr Jenkins….he is an absolutely amazing man!!!!!!! Just before my surgery (b4 finding cc) he sat by my side (on the OR bed) and held my hand and (I may not remember exactly ) but he said he would not leave my side until “I” felt completely comfortable and had all my ?’s answered. He is one of the most gentle brilliant human beings I have ever met . Along with Dr Jenkins , Dr Stuart and Dr Garren (radiation oncology) that Lahey team is unbeatable from start to finish!
Hi Patrice…sorry to hear about your husband. I am being treated at Lahey Clinic in Burlington MA. Honestly they are amazing especially compared to all the other hospitals I have been in including NEMC. I actually went into surgery to have a “plumbing Job” to reroute my bile duct/intestines due to a stricture. I had multiple negative brushings so was very shocked when my surgeon opened me up and right away knew he was dealing with cancer! He ‘went into cancer mode” and removed all that he could ..he was not able to remove all of it from my portal vein and I had multiple positive lymph nodes. They took amazing care of me at Lahey and as I said put me on xeloda and radiation and so far my scans are good. My surgeon is a Liver surgeon one of the best in the country and a really kind man…Dr Jenkins ..I credit him and my oncologist Dr Stuart for saving my life. Small world..my folks live on the cape too.
I also hope to grow old…already there on some days but I agree I’d love to have matching walkers. I always pictured my husband and I on our rockers looking out toward the mountain. These days we may knock each other off our rockers. The stress this illness puts on the family is overwhelming at times. I think he just does not get the fact that I think about my life as uncertain….and how I worry about the future. Oh…the past few years were such a blur that I got the name of my surgery wrong…I had a roux en y hepatico jujenostomy instead of a choleodocojujenostomy..who’d of thought I’d ever even attempt to spell such big words…;} Do most people have that surgery??? Also how do others cope with the fatigue? My oncologist has started me on a very low dose of ritalin.. too funny because it has not made me any smarter…but it has helped some with my fatigue. I am releived to have others who understand to chat with. Have a beautiful day. deb :}
thank you chrissy for your kind words. I look forward to getting to know all of you and share our stories.
Hi Jeff, thanks so much for your reply. AMAZING 9 YEARS for you wow!!!!! You just gave me such hope that maybe I will be able to watch my youngest little boy grow up after all! Oh thank you truly for sharing your story… As for my testing I am now having CT, PET scans or MRIs every 3 months and seeing my oncologist every 3 mos and my liver surgeon 6mos apart..yippeee I was so exhausted from all the appts as I am sure you are familiar with. I feel bad that you still have so much pain as to need morphine. I just stopped taking my vicoden about 2 mos ago…not fun for sure but I had problems with pain management due to how long I was on vicodan. I can honestly say that since stopping my pain meds I actually feel better..who’d of guessed. I look forward to chatting again..thank you and Godbless you and your family..deb
